1. ACE Committee Caring together…. a Carer's Diary to Improve Communication and Care during End of Life Care. Mel McEvoy, Edwin Pugh, John Blenkinsopp, James Andrew 16 th September 2011

2. ACE Committee Overview The problem in practice A good death Research Methodology Objectives of the research Research Process Results Carers’ views Conclusions

3. ACE Committee The problem in practice  The experience of end of life care leaves an impact on informal carers.  Informal carers should have a role that involves decision-making and their needs should be regularly addressed.  In acute trusts over half of complaints about care relate to care of the dying. The End of Life Strategy (2008 )

4. ACE Committee The problem in practice  Professionals lack skills and competencies  inability to recognise when someone is dying, communicate inadequately  uncertainty about how to deliver the best care  Complaints mainly: poor communication, lack of basic comfort, privacy and psychological support. Health care commission ‘Spotlight on Complaints’ (2007& 2008)

5. ACE Committee A good death  Being treated as an individual, with dignity and respect.  Being without pain and other symptoms.  Being in familiar surroundings.  Being in the company of close family and/or friends. The End of Life Strategy (2008, p9)

6. ACE Committee Research Methodology  Action Research  Develop a tool to address carers needs  Captures the views and experience of carers and clinical staff.  Reviewed and validated by a focus group of local carers who had relatives that had died within this Trust.  the wards and key workers were prepared in introducing the diary

7. ACE Committee Objectives of the research  To develop engagement and collaborative practice between health professionals and relatives/carers.  To empower relatives/carers to deal with specific perceived difficulties.  To better prepare and involve relatives/carers in end of life care.  To provide quantifiable data from a relative/carers’ perspective on the quality of care achieved in the last days of life.  To contribute to the effective delivery of the end of life pathway in an acute setting.

8. ACE Committee The diary

9. ACE Committee Research Process  The diary was introduced to the carers of dying patients on the Liverpool Care Pathway.  Trial period March to August 2010.  Both hospitals and all wards.  631 patients died in this foundation trust  275 were placed on the LCP which is 43% of all deaths.  Study assisted by R&D incentive fund.

10. ACE Committee Research Process  60 carers completed the diary  Ward staff were challenged by the task and were uncertain about the process.  Some patients died quickly before their relative were asked.  Some relatives refused to engage in the process due to their emotional states.  Some relatives took the diary home and didn’t return it.  Some patients didn’t have relatives or had relatives that did not want to visit.  The uptake of the diaries were assisted by the role of the research nurses.

11. ACE Committee Carer’s diary database

12. ACE Committee Overview of wards

13. ACE Committee

14. Results  52% of the carers made additional comments  There were positive and negative comments on aspects of care  There were statements about personal loss and bereavement.  Suggests that carers felt confident and sufficient trust to articulate in writing their views  Assumption is that on wards the diary helped clinical staff form better relationships

15. ACE Committee Content Analysis categories 1. Comments on diary usage D1. “We found it very useful to fill this diary. We found It helpful at this difficult time. We did not find it distressing at this very difficult time.” D2. “I found it quite helpful & not at all distressing.” D5. “We found completing the diary was no problem.” D7. “Easy to fill in. Helpful at a difficult time."

16. ACE Committee 2. Comments on how it helps D5.”Yes- helped us see the progression and ease of the pain relief.” D8. “I found it helpful because it focused my mind on the fact that he was comfortable and that gave me comfort.” D20. “..became a part of the routine. It was helpful to have something to record. Although the repetitive nature of the questions was sometimes off putting.”

17. ACE Committee 3. Comments on issues in clinical practice D51: “Two concerns when it was decided my husband was for the pathway a nurse removed oxygen mask and took it from the room. Returned gave me the diary at the end of bed. I had to ask to go outside to discuss this as it was somewhat insensitive to speak in front of the pt.” D35: “I feel there should be a separate room to cover the needs of families who are waiting for loved one’s to pass away and feel it should be more private as it is a very personal matter and you don’t want visitors to see loved ones upset.”

18. ACE Committee 4. Observations on care D5,6: “I feel if her meds had been topped up during the night she could have been pain free & anxious free all day. A lot more restful & settled than yesterday spoke to her doctor about agitation in the morning meds have since been reviewed. Not as settled today as the past two days. Was given medication which helped only after the 2nd dose was given. Breathing a bit easier.” D7: “mum’s nappy needed changing + she needed to be repositioned in the bed after request / took 1 hour to attend.”

19. ACE Committee 5.Expressions on thanks and appreciation D9: “Thank you for all your help and support x.” D17: “Thank you for the care and attention & for being so open with us. All seems to be well taken care of. Thank you.” D28: “We don’t feel that the nursing staff at North Tees could have done any more than they have done.” D42: “Nothing else. The staff are excellent very kind and caring. Thank you. My father agrees.”

20. ACE Committee 6. Expressions of exceptional care D5, 6: “Total care 110%. You all went the extra mile for Mam.” D29: “Everything has been exceptional. Staff could have not done anything more than have done. Everything and everyone have been exceptional.” D1: “We can not explain in words how we feel about the care and dedication of the doctors and staff on this ward. (ii) They have been our rock-our shoulder to cry on. And most important THEY CARE. Thank”

21. ACE Committee 7. Personal expressions on death dying and bereavement D2: “As a carer, for my mother for the last few years this has been an interesting experience and quite uplifting, (signed name).” D7: “Very sad watching mum waiting to die and remembering her life as a young person.” D18: “In these circumstances euthanasia should be legal.” D7: “Mum has been well cared for today to the question could anything more be done answer no. Mum passed away peacefully 3 pm.” D18:”Peaceful day with dad. Staff wonderful as ever. Very grateful. Dad died 10 pm very peacefully with his four daughters present (names omitted) God bless.”

22. ACE Committee Findings  The diary promoted collaborative working and improved communication.  Carers raised issues and saw treatment altered.  Individuals said the diary helped them see the change.  Provided a framework through which the priorities of care could be seen such as symptom control and psychological support.  Carers were better prepared and involved in the dying process.  Possibly reduced trauma in bereavement.  Some carers implied that engagement was uplifting.

23. ACE Committee Who completes the diaries? 5 completed by daughters 4 completed by brothers 4 completed by sons 2 completed by husbands 2 completed by cousins 1 completed by sister 1 completed by wife 1 completed by niece

24. ACE Committee Conclusion This research should be seen as contributing to addressing carers’ needs and a further step in ensuring a good death for patients and relatives. It compliments the focus that the Liverpool Care Pathway provides. It should be seen in the context of integrating the principles of palliative care in the acute hospital setting. The research is ongoing for another year.

25. ACE Committee Bereavement care ‘There is a range of evidence (Stephen et al 2006) that the way those who have been bereaved experience the events around the time of death will influence the trajectory of their grief journey. Where health services get it right, showing empathy and providing good quality care, bereaved people are supported to accept death, and move into the grieving process as a natural progression. Conversely if the health services get it wrong, then bereaved people may experience additional distress, and that distress will interfere with their successful transition through the grieving process, with implications for them, those around them and for the social economy of the nation.’ Shaping bereavement care a framework for action for bereavement care in NHSScotland (2011).

26. ACE Committee Any questions? Thanks should go to the frontline ward staff who are meeting the emotional challenge of caring for families of dying patients in very busy environments.

27. ACE Committee References Shaping Bereavement Care a framework for action for bereavement care in NHSScotland (2011) Department of Health (2008).End of Life Care Strategy: Promoting high quality care for all adults at the end of life. London:Department of Health. Healthcare Commission (2008) Spotlight on complaints-report on second stage complaints about NHS in England. Healthcare Commission (2007) Spotlight on complaints-report on second stage complaints about NHS in England. Stephen AL, Wimpenny P, Unwin R, Work F, Macduff c, Demoster p, Wilcock SE and Brown AM (2006) Bereavement and bereavement Care: consultation and mapping practice (phase 2) Aberdeen: Joanna Briggs Collaborating Center, The Robert Gordon University.